Rare Awareness Radio

Written by: Rare Awareness Radio
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  • Summary

  • Shedding light on underrepresented diseases and the efforts of non-profit foundations working tirelessly to support those affected.
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Episodes
  • EP 8 Yiwei She

    EP 8 Yiwei She
    Feb 1 2025
    In this powerful episode of Rare Awareness Radio, we sit down with Yiwei She, founder of the TNPO2 Foundation, to discuss her inspiring journey from mathematician and AI professional to rare disease advocate. When her son, Leo, was diagnosed with an ultra-rare genetic condition, Yiwei refused to accept the lack of treatment options. Instead, she launched a foundation dedicated to advancing precision medicine and improving early genetic diagnoses for children with rare diseases. We dive into the challenges of navigating the healthcare system, the groundbreaking role of AI and biotech in drug development, and the fight for equitable access to life-saving treatments. Yiwei also shares the mission behind Project Baby Lion, an initiative designed to accelerate diagnoses and connect families with the right resources. This episode is a must-listen for anyone passionate about medical innovation, rare disease advocacy, and the power of technology to transform lives. 🔗 Learn more about the TNPO2 Foundation: tnpo2.org
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    31 mins
  • EP 7 Zeke and Chanin Zaragoza

    EP 7 Zeke and Chanin Zaragoza
    Jan 19 2025
    In this powerful episode of Rare Awareness Radio, we welcome Chanin Zaragoza and her son Zeke, who share their inspiring journey navigating life with Opsoclonus-Myoclonus-Ataxia Syndrome (OMS). Diagnosed at just three years old, Zeke's path has been marked by resilience, determination, and unwavering faith. Zeke’s incredible achievements, including playing Division 1 football at Oklahoma State University, defy expectations and showcase the power of hope and perseverance. Alongside his mother, Chanin, Zeke has turned his personal story into a platform for advocacy, inspiring countless others affected by rare diseases. Together, they discuss the challenges of diagnosis, the role of community and faith, and their ongoing mission to bring awareness to OMS and support other families facing similar battles.
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    34 mins
  • EP 6 Adam Clatworthy

    EP 6 Adam Clatworthy
    Jan 5 2025
    In this heartfelt episode, we welcome Adam Clatworthy, founder of CRELD1 Warriors, a UK-based charity supporting families affected by the ultra-rare genetic condition CRELD1. Adam shares his deeply personal journey navigating his children's diagnoses, building a global community, and advocating for awareness and research. Learn how one family's determination creates a lifeline for others in the rare disease community. Listen now to hear Adam’s inspiring story of resilience, community, and hope. For more information, please visit https://www.creld1.com/
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    47 mins

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